SammyJo goes to Stanford

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Best wishes for a most sucessful outcome

Postby Ruthless67 » Wed Nov 04, 2009 1:16 am

Hi SammyJo,
I’m new to this site and have enjoyed reading the posts and learning about CCSVI. I hope your recovery period is as flawless as the installation was. With lots of rest and pampering. I hope you have great relief from your MS symptoms.

Hi Skydog,
I’m sorry you have to go back for additional stinting. I’m sure I’d “feel a little apprehensive this time around” too. I look forward to reading a positive and long-lasting outcome this time. I’ll be thinking of you on the 13th.

And to all of you other courageous CCVSI pioneering patients, thank you for sharing.
It's so amazing to be able to follow along with you all on each of your separate and amazing journeys. I’d love to read more updates from those who haven’t updated their CCVSI Tracking posts, or do you all do that somewhere else? I’ve been exploring and reading my way through, and I must say this is a hard site to tear myself away from. I’ve still got a lot to learn.

Regards, Ruthless
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Postby mormiles » Wed Nov 04, 2009 7:43 am

Sammy Jo, You've been one of my heroes for years---I admire your fighting spirit, hard work, and courage. May you be blessed with healing, recovery, and a well-earned rest as a result of your CCSVI treatment.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby kjwxau » Wed Nov 04, 2009 10:31 am

Been following you also for years on the LDN sights. I look forward to your experience on the stenting. Kim Z
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12/05/09 Update

Postby SammyJo » Sat Dec 05, 2009 11:41 pm

This is going to be a short update because shoulder pain has been keeping me from typing. Shoulders started to get markedly better yesterday but I'm not going to push it. Also had some trouble with warfarin, low hematocrit (close to transfusion level) due to heavy menses for 17 days led to passing out and 2 trips to the emergency room. Off warfarin since 11/29, taking an iron supplement and feeling better. Yes, ironic given the iron overload in the brain, butcha gotta have iron in the blood too. I will get my log posted, seeing some exciting and significant improvements in long-standing physical problems (improvements in heavy leg feeling, urgency, balance, walking, toe drop, fatigue, spacticity, extensor spasm).

But this is a difficult recovery for someone with significant disability to begin with (SPMS 15 years, EDSS=5.5). I had worse disability the first week after stents, for the first time my arm movements were weakened (husband had to lift me in and out of bed). What drove me to take the plunge was 3 relapses over the last two years (triggered by fevers) that added new and lasting disability. I felt the next relapse could leave me bed ridden, so I felt I had to take immediate action.

At the bottom of my images page I added the x-ray from one month after stents (link) to my untrained eye, it seemed there was a big difference in the space between upper and lower stents, but I sent it to Dr. Dake and he said this was due to parallax, different camera angles between the flouroscope and the x-ray. Tip: keep your stent procedure notes and Dr. phone numbers handy if case of trip to ER. Once the doctor, nurses and techs saw the report from Stanford, the X-Files suspicion lifted, and they were excited to hear the CCSVI hypothesis.

Think carefully about this decision, it does have risks, and not everybody is reporting immediate improvements. All I can do is go to physical therapy every week and do my daily exercises, but I will keep track and share my results. LDN was my first "get out of jail free card". It gave me a great four years of recovery, but started to slip the past two years. I hope this is my second card. I am about n=60 in our joint experiment, and look forward to the unfolding outcome.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 |
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Postby LR1234 » Sun Dec 06, 2009 4:17 am

I also hope this is your second "get out of Jail free" card.

I am so sorry to hear of what happened to you with low iron levels.

I think many people (including myself) underestimate how dangerous blood thinners can be.

I hope you are back on track now to recovery.
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Postby CRHInv » Sun Dec 06, 2009 5:40 am

Wow! I am so glad you are having improvements. I am so sorry about the troubles though. Thanks for the good advice about having the stent procedure notes. I need to get those. I had never noticed one of those www links next to the profile and pm 'buttons' after a post. I need to investigate your LDN links further. Very interesting.

Heres to getting out of jail free! I can't wait to hear more. Keep healing!
Take good care,
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby mrhodes40 » Sun Dec 06, 2009 8:32 am

Goodness Sam, what an ordeal!

I am glad you posted to keep it real. This is real surgery. for more disabled people especially the recovery is not uneventful. I am a 6, I did not need to be lifted out of bed at all, but I sure knew I was in healing mode, not on holiday.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you... This is my regimen thread Read my book published by McFarland Health topics
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Postby Loobie » Sun Dec 06, 2009 10:12 am

You know I felt so bad on my return flights home and I think you're right. If you already have significant MS, this procedure is not easy to get over. I absolutely hated the recovery part. Couldn't eat right due to opening my mouth problems, couldn't do a lot right. It wasn't easy and that part should not be discounted as no big deal. It was not fun!
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Postby cheerleader » Sun Dec 06, 2009 10:18 am

glad you're on the upside of the blood thinning issue- but there's another teachable moment...coumadin + menstruation is not good.

The problem is, the more serious the MS, the more stenosis, the more intervention, the more recovery. It's a sad reality that the more progressed patients will have a much more difficult time with a stent procedure. We learned that the hard way for poor Marie, after Jeff had a pretty easy time. Which is why we need early diagnosis, intervention and why docs like Zamboni, Dake and Haacke are saying we need to look at this yesterday.

Thanks for sharing the good, bad and ugly and your xray pics are very illuminating, too! Hang in there, SJ-
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Sharon » Sun Dec 06, 2009 12:03 pm

So sorry SammyJo that you have had to deal with a hard recovery. It is so important for people to realize that for many who have gone through the procedure, the recovery has been lengthy and painful.

The weakness in your arms and shoulders -- oh, my gosh -- I know what you are talking about. Keep up the PT -- use a theraband to help with stretching for the range of motion. Send me a PM if you would like some hints. I also used a muscle relaxor -- I should have started the relaxor sooner than I did -- it was enormous help to ease the spasming.

Keep us posted -- better days are ahead for you

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Hi Sammy Jo...

Postby JoyceF » Sun Dec 06, 2009 5:18 pm

Just wanted to say thanks for all the time that you have devoted to helping MSer's here with the whole CCSVI thing and with your LDNer's website. I am anxious to hear all of the reports from people that have undergone this procedure and do appreciate the time and effort it takes to get this news out to those that so deparately need it. Godspeed to feeling better and again, thanks for the report. I will continue to follow this and hope that more MS centers get intuned with what may very well be what will actually help all of us.
You sound like you are on the better side of healing with this thing..{{{hugs}}}. Can't wait to hear more. Take it easy and take care of yourself.
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Re: 12/05/09 Update

Postby judipom » Mon Dec 14, 2009 10:58 pm

SammyJo wrote:Think carefully about this decision, it does have risks, and not everybody is reporting immediate improvements. All I can do is go to physical therapy every week and do my daily exercises, but I will keep track and share my results..

SammyJo--When I first heard about CCSVI I thought "great, I'll have my veins done and voila--I'll be dancing the tango." The posts from you and the others have made me realize this is major surgery with possible complications and not to be taken lightly. Thanks for your honesty. It is invaluable. Judi
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
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Postby SandyK » Tue Dec 15, 2009 12:47 am

So glad you're doing better. You are often in my thoughts.
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Postby Johnson » Tue Dec 15, 2009 1:10 am

I just wanted to add my best wishes for your recovery, and to thank you for your candor. I have had no illusions, and hearing all of the reports, good and not great, is important to my own decisions. I'm still going to do it.

I wonder if you have considered iron chelation, and if that might not help in regaining things faster.

I recommend Dr. Norman Doidge's book on brain plasticity, and Dr. Jill Bolte-Taylor's story (I know others have too!). Hope, hope, always hope. I hope we all have so darned much hope.

Also of interest is Posit Science.

That link is to their free stuff, but they do sell programs. I find that it doesn't help much with the fog, but using your opposite hand for things, and other simple exercises, seem to make subtle differences.
My name is not really Johnson. MSed up since 1993
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Status update 01/09/10 - 10 weeks post CCSVI Procedure

Postby SammyJo » Sat Jan 09, 2010 7:28 pm

Finally got my Tracking Log posted (link).

Shoulders much better, headaches gone, can sleep on my side again. Morning extensor spasms are gone, and night time leg spasm stopped with IBT on 12/25. Urgency is still an issue, but improved. Energy picking up, yesterday I tidied up the kitchen for the first time. Doug was able to take a 3 month leave from work while I recovered, and he has done all the housework & cooking. Only painful thing is a twinge in left mid-jugular stent area when I turn my head to left suddenly. Returning to Stanford this week for 2 month follow up.

In December I didn't think I could make the trip to Stanford, I was so worn out, so I started looking for a local doctor that could do the MRV follow up scans and send to Dr. Dake. Was all ready to go with Univ. Washington at Harborview. but it turned out they didn't have the same GE brand of MRI, so could not run Dr Dake's protocol. Perhaps they will be able to run Dr. Haacke's protocol, that uses a Siemen's MRI By the first week of January I hadn't heard from two other vascular doctors I contacted at Swedish Hospital, even though they had the right GE MRI. Then I saw on a post from Joan that the MRV is dependent on technician's being trained properly, so between that detail, and my energy picking up, decided to go to back to Stanford, and will have my follow-up on 1/14. Looking forward to seeing Dr. Dake, getting his assessment, and asking lots of questions! I will post new image results.

I am very glad I got to do this procedure, I'm not browsing nursing home websites anymore, and have hope that I will be able to slowly regain more functionality. And I am doing everything I can to help expand awareness of, and access to CCSVI treatment for others with vascular occlusions.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 |
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